March 11, 2010

For all of you that stopped here in hopes of a horror story about private insurance just keep looking this is not that story.

My condition (fibrous dysplasia FD) was first discovered by the Veterans Administration (VA) in 1993. Interestingly enough once I turned 21 my records were conveniently lost. The VA would forever be responsible for my care if the records existed. I did not see another doctor again until 2005 due to my dislike of the procedures the VA offered. These details can be found in other posts.

By the time I went back to a doctor I was insured on my wife's private insurance. In the past three years I have visited multiple specialists and have received many perscriptions and in all this time I have only had three refusals of payment from the insurance company. Two of these were for perscriptions and the insurance company recommended a different brand of the same drug that they would cover. The recommended drugs were the exact same as the one my doctor had ordered but they were not as expensive.

The only other time I had a refusal it was easily fixed. The issue occurred when I applied for Social Security benefits (which were denied because I spent too much time trying to work instead of just applying and not trying to make it on my own for years). The Social Security Administration denied my claims but generated paperwork that made it appear to my doctors and then the insurance company that I had another primary insurance. This meant that my insurance began to refuse claims because they were no longer listed as the primary insurer. This fix was as simple as cutting butter with a hot knife; I called the insurance company and described the problem. The customer service rep looked up my information and confirmed the issue. She then asked me to hold for about five minutes. When she returned to the line she informed me she had fixed the data in their system and resubmitted the claims. Problem FIXED.

When it has come to specialists I have never received a refusal. As long as I assure the specialist is in network my costs have remained low and I have always been able to find a highly qualified specialist.

A little over a year ago I had a major surgery and the insurance company approved the surgery and paid for everything. Now I know my wife did call the insurance company and do the pre-certification herself. She tells me this is because even though the doctor and the hospital are in network the anesthesiologist and other medical staff may not be participating in the plan. She always calls on the per-cert herself and does not leave it to the surgeon because when she calls the insurance company walks her through everything and then she knows what is covered and what is not covered. In our case the surgical assistant's full price would not be covered but he was willing to take the insurance negotiated amount so he could work with the surgeon. As noted in the past these little steps of directly working with the insurance company have always allowed us to get the services we need while keeping costs low.

On the other side of the issue I know multiple people that have struggled through care at the VA. I know consultants that have been hired to work with the VA to improve care. In one case I know of a VA project that has VA staff and the staff of two consulting firms working on outsourcing veterans care to private hospitals so that the veterans receive better care. I know of people that finally paid for their own surgeries because the VA refused to allow surgery even though their doctor recommended the surgery. I know of one man that had to fly from CA to CO to get a routine preventative test because the CA hospitals could not get him as soon as the VA insurance demanded he receive the test or lose benefits. I know of multiple people that have had to have scans and services done multiple times because their files have been lost.

My personal experiences make me unwilling to place my private insurer on the gallows so if you want to hear a story about private insurance abuses I am not the man to ask.

March 3, 2010

I have decided the time has arrived for me to tell my story of living with Sean and fibrous dysplasia (FD).

The early years of our marriage were so hectic for various reasons that FD never seemed to be an issue. I was not aware of the extent of the condition or the extent of Sean's pain and I really did not become aware of Sean's pain level until he quit drinking. However, when you have married an alcoholic and they "recover" you find yourself living with a different person and once again FD was not at the front of my mind. I can look back now and see that many of these early struggles were aggravated by FD but I really did not have an understanding of Sean's condition and Sean has a tendency to not tell you when he is in pain.

Once our marriage stabilized I started to become more aware of how FD was affecting Sean. Over the years I have noticed that during times of high stress Sean's pain is much worse (not unexpectedly). I also noticed that at these times you could see noticeable growth in his brow bone. Even before we had MRI scans to measure the growth level I could physically see the growth and the change of his facial features.

In September of 2008 Sean had facial reconstruction in hopes that some pain would be alleviated and to shape his face back to normal. The surgery was the most trying time of my life. It had only been a year since Sean had gotten on a good pain therapy and was himself. I stayed at the hospital during the four hour surgery time and received updates from the operating room about every hour. Once Sean was moved from the recovery room into a hospital bed a nurse shot his IV morphine directly into his vein and Sean started to have trouble breathing and his lips and toes were turning blue. Praise to God that the head nurse arrived in time and was able to give Sean another shot that revived him. After this experience Sean was not willing to be left at the hospital alone so I spent the next four days by his side. The hospital also would not give Sean his sleeping pills so we both spent all this time awake. When Sean came home from the hospital he was on major pain meds and was very sensitive to light and sound so I spent the next two weeks trying to keep all the pets and the kids outside. The extreme sensitivity to light faded but the sound sensitivity is with us still today. To be honest I often ask myself if we did the right thing by having the surgery because for 14 months after the surgery I felt as if I had lost my husband.

During the past four months we have achieved a quality of life for our whole family. Of course if you have been following this blog you know that last month that was thrown into chaos. As we are now facing a new round of pain management I will explain the emotional roller coaster I have lived on and that I fear repeating.

Over the years I have learned that Sean usually has three reactions to medicines. One reaction is extreme aggression. Another reaction is extreme docility and loss of muscle control. The other common reaction is hyperactivity. All of these reactions are coupled with an inability to make good decisions. For example one time Sean went to the store and bought $100 dollars of Pringles because he was sure that my mother had asked him to. I was out of town and he called me from the store because he could not remember how he got there or where the car was parked. After this the whole family learned that even the drugs that Sean had been on for months could have different reactions on different days.

We worked with our doctor to determine a pain therapy that very seldom had these reactions and that were predictable enough for me to know what to expect. Now that we have to change doctors I am faced with losing my husband. When Sean has any of these reactions to a medicine I lose the man I love as his personality becomes so different. I set here today with my husband and wonder how long I will have my better half. I remember so clearly one day walking through the grocery store with Sean following me like a puppy dog and tears still stream down my face. I called my best friend that night and said I'm afraid I saw my future today and it feels like my spouse died. Thankfully we were able to get on a therapy that brought Sean back to me but my heart quakes as I think of our Dr. appointment Friday to look to an alternative medicine as we can no longer seem to find a traditional doctor that is not afraid to give pain meds or wants to treat Sean as a Guinea pig.

I have had FD since child hood but the condition was not discovered until I was in a bad motorcycle accident and amazingly did not sustain any noticeable head trauma. Due to the severity of the accident (and the fact I was conscious - against all odds) the doctors did a full body MRI. To their amazement my skull was abnormally thick and not broken or fractured. This discovery led to mass excitement in the emergency room and eventually to the second best neurosurgeon in the military.

The year was 1993 and I was twenty years old and not ready to face reconstructive surgeries. Especially given the fact that the first doctor I saw was way to abrupt in his description of the surgical options. Since the medical records from these first visits were lost by the military I do not have a baseline of the growth in 1993 but I know the skull was thick enough to sustain a 40 mph impact with a retaining wall. Ironically FD saved my life.

I met Yvette later in 1993 and we married in 1997. I did not seek medical care for FD from 1993 until 2005 due to the fear of having doctors "crack open my skull and scrape it out". During these years I self medicated with alcohol (a story for another time). In 2005 a personal tragedy led Yvette to a counselor and she recommended a doctor for Yvette to visit. Once Yvette saw Dr. K he diagnosed her life long pain condition that no other doctor had diagnosed in 30+ years. She learned to trust and like Dr. K and finally convinced me to visit the doctor. Dr. K was able to win my confidence and to start a series of tests and specialists visits to determine what options were available to me.

I have seen various specialists including ENTs, pain management, and neurosurgeons. In September of 2008 I had facial reconstruction surgery in hopes that some pain would be alleviated if the nerves in my scalp were deadened. At this time the external bone of my skull was shaved and reshaped. It was also determined at this time that going into the skull was too risky as the bone is embedded in my frontal lobe and I have no desire to receive a frontal lobotomy. Since September of 2008 I have worked with Dr. K to maintain a pain management treatment and you can read more about that in my other blog entries.

March 2, 2010

I just returned from the pain management clinic. What an experience! I had to take a drug test and learned that there is a database (PDMT) kept by the state that my name is on due to being on pain meds. I have to say I was horrified to find that the state is tracking my prescription use. While I understand there being a drug culture what gives them the right to track this with out my knowledge?

This doctors "office" was crazy. The office was dirty and in no way felt like a medical facility. It was located in a warehouse and felt like one. There was no lobby and chairs had to be fetched from other rooms for waiting patients. The exam room was actually an acupuncture room that had once been an x-ray room. There was a fight (yelling) between one patient and the doctor and people walked out of their appointments. The staff was unfamiliar with this "satellite" office and needed our assistance to give driving directions to other patients.

Moving on to the consultation. Once again I am faced with the choice of being a guinea pig for new drugs and therapies instead of being allowed to just continue the therapy that my general practitioner and I have found to work. The doctor seemed competent but actually stated she did not care about what I had tried in the past she was just looking to start over with the process. She was more than happy to prescribe opiates but wanted to take me through all the trial and error I have already done. However her willingness to send info to my GP is reassuring as I will continue to consult him through all therapies. The next steps for this clinic is for my drug test to come back from the lab and for the PDMT report to return clean. Then they will determine if I can be accepted into the program.

Overall I was very uncomfortable with this whole visit and on Friday I am going to another pain management clinic to discuss alternative medications.

February 27, 2010

This is the story of how we have worked with our doctor to manage the costs and quality of care for Sean's rare condition and our families medical care.

To control our costs we utilize a few simple but effective practices:

We make sure our general practitioner (GP) has records from all other doctors and that we never have a test or receive new medicine without our GP's knowledge. This not only controls costs but keeps us from endangering a life by having conflicting prescriptions.

We take our insurance Rx formulary (a list of prescriptions covered by our insurance) with us to all appointments and check to make sure any perscriptions given are on the formulary. If they are not listed we find a comparable Rx that is on formulary. Note: we have always been able to find a comparable Rx that is on the formulary or have been able to work with the insurance company to get the Rx approved.

We retain copies of all tests, x-rays, scans, and doctor files. We take these with us to any new doctor so that scans etc. do not need to be repeated.

Two people attend every appointment. This assures we hear and understand everything and that the doctor receives the full picture of our sickness from our and our family's point of view.

We ask questions and understand our conditions and the treatments available as well as the risks and benefits of every treatment.

These simple practices have not only kept our costs down but they have also assisted us and our doctors in improving our quality of care. We take personal responsibility for our health care and do not rely on our doctors to be alone in understanding our conditions or our treatments.

I realize at this time it is popular to hate private insurance companies but we can not engage in that activity. During the five years that we have had private insurance we have received much more than we have given. When we have worked with the insurance company we have always been able to find a common ground that allows us a great quality of care while allowing them to control costs. We view this as a civic duty to assure that our friends, neighbors, and fellow countrymen do not have to pick up costs we could avoid.

Our experience with private insurance stands in great contrast to Sean's previous experience with the military and our private insurance has provided many options and speed of care that we do not see with our family members that have VA, or Medicare.

My name is Sean Cowlishaw and I have a rare condition (fibrous dysplasia of the skull). In short my skull has never quit growing and bone is surrounding my optic nerves, has filled my sinus cavities, and is putting pressure on my brain. My condition is extremely rare in that the bone growth did not end in puberty and the bone continues to grow to this day (I am in my thirties).

About three years ago I finally found a doctor that not only helped me find answers but that works closely with me and my family to assure us a high quality of life. I have also been blessed in that I have had good insurance (for the past five years) and a wife that understands the health care system. My wife and I have worked closely with our doctor to keep costs down for both us and the insurance company and to maintain a high quality of care (see my blog entry about cost containment).

As the Health Care Reform debate heated up in 2009 my quality of life was significantly lowered. The first blow was that my costs for specialists were raised due to the media and Congressional blitz about high quality insurance plans. At first this was not a huge issue for me as I have seen ever specialist possible and there is nothing they can do for my condition. The specialists had sent me back to my general practitioner for pain management and for almost a year my quality of life was the best it had been for a long time. I had one doctor managing my care and he took all aspects of my quality of life into consideration as well as doctoring my full person not just my fibrous dysplasia.

In February of 2010 the second and worst blow fell. I was called into my general practitioner's office and told he was no longer allowed to practice pain management. The clinic management has determined that because of the DEA practices of treating pain management doctors as drug dealers it was too big of a risk for their doctors to prescribe pain medicines. The clinic was only able to give us the names of two practices that are still willing to prescribe pain meds. One option will cost us and our insurance three time as much as our general practitioner. The other option costs over $1000 more a visit and is not covered by insurance. We have our first visit with the new doctor on Tuesday and will update this blog continuously.